Re: New here- gabby (Dr. Kellogg-Spadt)

[Guest guest]

Hi Hollis and Gabby,

I remembered that she published some papers on capsaicin treatments for VVS. I found one article here:

http://www.femalepatient.com/html/arc/sig/21st/articles/article_3.asp

Lily

[Guest guest]

Hi Hollis and Gabby,

I remembered that she published some papers on capsaicin treatments for VVS. I found one article here:

http://www.femalepatient.com/html/arc/sig/21st/articles/article_3.asp

Yes, she's big on the capsaicin treatment protocol. In the past, i've read posts

from women for whom it really helped and others who couldn't tolerate it.

Apparently, she doesn't spring that on patients first thing, but, rather, works

up to it if other treatment options aren't working.

Years ago, when i was dealing with "just" IC, i came up with my own plain yogurt- dunked cotton ball-with-a-sprinkle-of-cayenne-and-golden seal treatment --

which i placed over my urethra every night. Little did i know that i was on the

cutting edge of innovative vv treatment!

Hollis

[Guest guest]

Hello

I was interested in the answer from Hollis re the yogurt dunked cotton ball, that you have IC. I have just been diagnosed with Lichen Sclerosis and have had IC for twenty years. Has anyone found any connection?

Would love to discuss.

Thanks

Re: New here- gabby (Dr. Kellogg-Spadt)

Hi Hollis and Gabby, I remembered that she published some papers on capsaicin treatments for VVS. I found one article here: http://www.femalepatient.com/html/arc/sig/21st/articles/article_3.asp Yes, she's big on the capsaicin treatment protocol. In the past, i've read posts from women for whom it really helped and others who couldn't tolerate it. Apparently, she doesn't spring that on patients first thing, but, rather, works up to it if other treatment options aren't working. Years ago, when i was dealing with "just" IC, i came up with my own plain yogurt- dunked cotton ball-with-a-sprinkle-of-cayenne-and-golden seal treatment -- which i placed over my urethra every night. Little did i know that i was on the cutting edge of innovative vv treatment! Hollis

[Guest guest]

Are they both auto-immune diseases?

I have interstitital cystitis and my urologist tells me he believes IC to be auto-immune.

From my experience, if you have one auto-immune problem the chances are you might acquire another. I have pretty severe allergies, an intolerance to gluten (wheat), IC, vulvodynia (which my doc says is neuralgia and not auto-immune), and now some type of lichenoid dermatosis too.

What exactly is lichen sclerosis? I know folks have talked about it on this list but now I have more of a reason to pay attention. : )

Re: New here- gabby (Dr. Kellogg-Spadt)

Hi Hollis and Gabby, I remembered that she published some papers on capsaicin treatments for VVS. I found one article here: http://www.femalepatient.com/html/arc/sig/21st/articles/article_3.asp Yes, she's big on the capsaicin treatment protocol. In the past, i've read posts from women for whom it really helped and others who couldn't tolerate it. Apparently, she doesn't spring that on patients first thing, but, rather, works up to it if other treatment options aren't working. Years ago, when i was dealing with "just" IC, i came up with my own plain yogurt- dunked cotton ball-with-a-sprinkle-of-cayenne-and-golden seal treatment -- which i placed over my urethra every night. Little did i know that i was on the cutting edge of innovative vv treatment! Hollis

[Guest guest]

Hello

I was interested in the answer from Hollis re the yogurt dunked cotton ball, that you have IC. I have just been diagnosed with Lichen Sclerosis and have had IC for twenty years. Has anyone found any connection?

Would love to discuss.

Thanks

,

I do know that there is a strong connection, unfortunately, between IC and

vv, but i really don't know what the correlation is with Lichen Sclerosis. I

would suspect that it's there, seeing how, as pointed out, there's an

auto-immune component to all of them. You might want to post on Dee's

LS group and see what they have to say.

Hollis

[Guest guest]

From what I understand it is a skin disorder which mainly affects post menopausal women. I am 58, and have had IC for twenty years, have also had overactive thyroid in the past. Several years ago, I contacted the HPV virus and have had a cone biopsy and pap tests have come back ok since then. I worried this time that the virus had attacked again and caused cancer of the vulva, and was relieved it wasn't. Apparently, there is a disease in my family called Sjogrens Syndrome, which is similar to IC. So it appears my family has a lot of autoimmune diseases of which I have three - IC, Thyrooid problems and now, they believe that Lichen might be one. Yes, it seems if you have one you can get another. I am just starting treatment today for the Lichen and will see how it goes..

Take Care

Re: New here- gabby (Dr. Kellogg-Spadt)

Hi Hollis and Gabby, I remembered that she published some papers on capsaicin treatments for VVS. I found one article here: http://www.femalepatient.com/html/arc/sig/21st/articles/article_3.asp Yes, she's big on the capsaicin treatment protocol. In the past, i've read posts from women for whom it really helped and others who couldn't tolerate it. Apparently, she doesn't spring that on patients first thing, but, rather, works up to it if other treatment options aren't working. Years ago, when i was dealing with "just" IC, i came up with my own plain yogurt- dunked cotton ball-with-a-sprinkle-of-cayenne-and-golden seal treatment -- which i placed over my urethra every night. Little did i know that i was on the cutting edge of innovative vv treatment! Hollis

[Guest guest]

Dear Hollis\

Thanks so much for reply. How would I get to Dee's LS group?

,

This will take you to the home page:

http://health.groups.yahoo.com/group/LichenSclerosis/?yguid=113465064

Hollis

[Guest guest]

Dear Hollis\

Thanks so much for reply. How would I get to Dee's LS group?

Re: New here- gabby (Dr. Kellogg-Spadt)

Hello I was interested in the answer from Hollis re the yogurt dunked cotton ball, that you have IC. I have just been diagnosed with Lichen Sclerosis and have had IC for twenty years. Has anyone found any connection? Would love to discuss. Thanks , I do know that there is a strong connection, unfortunately, between IC and vv, but i really don't know what the correlation is with Lichen Sclerosis. I would suspect that it's there, seeing how, as pointed out, there's an auto-immune component to all of them. You might want to post on Dee's LS group and see what they have to say. Hollis

[Guest guest]

Thanks much...

Re: New here- gabby (Dr. Kellogg-Spadt)

Dear Hollis\ Thanks so much for reply. How would I get to Dee's LS group? , This will take you to the home page: http://health.groups.yahoo.com/group/LichenSclerosis/?yguid=113465064 Hollis

[Guest guest]

I agree with Hollis - they are all autoimmune related. I have

several auto immune issues including Lichen Schlerosus (which seems

to be inactive right now thankfully). I have Chronic Fatigue

Syndrome caused by a few things I am working on at the FFC as well

as Lyme Disease - all my issues except Lyme are autoimmune. My Twin

sister just went to her first visit to the FFC yesterday, but she

was able to bring some recent blood tests and she has systemic

yeast, lichen schleorisis (was diagnoses 6 monts ago just brought it

up as it is autoimmune) They are sure to find more auto immune

issues with dear sis. I have other sisters (5 sisters total) that

have everything from Lupus, to Lichen Planus, Psoriasis, and Fibro

Myalgia. Autoimmune stuff is genetic but family members don't

always get the same disease. Two of my four brothers have an

autoimmune one has Thyroid and psoriasis the other has psriasis. We

are just a mess! But we all love each other.

> ,

>

> I do know that there is a strong connection, unfortunately,

between IC and

> vv, but i really don't know what the correlation is with Lichen

Sclerosis. I

> would suspect that it's there, seeing how, as pointed out,

there's an

> auto-immune component to all of them. You might want to post on

Dee's

> LS group and see what they have to say.

>

> Hollis

>